TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion

Brain Injury and Lying – The Rest of the Story

Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.

It seems so innocent…

I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.

I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.

The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? 😉 But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.

Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.

Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.

We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.

The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears. But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.

Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.

It took several years to get them back on track, but we did it. And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.

The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.

So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.

They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.

It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.”

And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.

Fear that there is something terribly wrong with them.

Fear that they are damaged beyond repair.

Fear that others will hate and look down on them because of the strokes.

Fear that they will never be “normal” again.

Fear that they’re going to die a horrible death and go to hell forever.

Fear that it is all TOO MUCHto handle.

So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.

There’s the lying.

I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.

I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.

It’s getting really bad. On a number of levels.

First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.

And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.

And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them andtheir spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.

Right. Emotional support. Unfortunately, I know differently.

This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.

Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.

And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.

It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.

But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… andtheir blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!

So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGERbecause they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.

When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.

At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.

But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.

None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.

Here’s to life – onward.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot.
I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life.
It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.
View all posts by brokenbrilliant

My dad has tbi and it has been one yr since his accident. He has gotten mad and went to sleep in the car and calls her to tell her he is riding horses and calls her and acts like he is having sex with another woman and just recent says he is moving away. We need help we do not know if he would hurt himself or if he is just playing tricks. He has done this for two days now. Is this normal for tbi or what. Please help us understand.

Oh, well, that can’t be good. I think you need to find someone he can work with — as well as find some support for yourselves. There are things you can do to support him, but you really need some help. It might be a chemical imbalance that is making him act like that — and it does sound pretty challenging. I recommend you look up your local brain injury association and ask them what can be done. If your dad has medical records of his TBI, then insurance may pay for help for him. It depends on the insurance. But there is support out there, and reaching out can help you get to the bottom of things. This is a good start — and the Brain Injury Association may be able to help, as well.

Hello. I need your help and this story gives me a lot of questions. Idk if you have a Facebook but I would love to converse with you on this subject. I know someone with a brain injury. I need sme clarity

Is your friend actually having wild, adulterous (and numerous) affairs, or is he fabricating them? An unkempt older man doesn’t seem a likely candidate to draw women into affairs, unless he’s filthy rich. How exactly is he finding these women? The whole thing is ludicrous. I know a TBI victim who solicits women via the internet and has zero success. His approach is obnoxious and off-putting but still, SOMEONE would have taken him up on it by now. I’ve looked at a few of his Messenger conversations with women and they are bizarre in the extreme. He is fairly young and can pass for well-groomed, and is decent looking. His voice is quite impaired as is his gait from damage to the cerebellum, plus he has advanced encephalomalacia. He remains untreated and not cared for by professionals in neurology; his choice. You say your friend is undergoing treatment but it doesn’t seem to be efficacious.
How your friend can rustle up all this action with the ladies is quite mystifying!

Hello my name is Melissa Kruizinga, from the netherlands.
I am looking for information to help my husband.
He is in his 30’s and is constantly making a mess of his life by lying.
I have watched his behavior for 5 years now and I really must say it looks like this is out of his control.
And he has been beaten and smashed on his head as a child by bullies in his childhood.
He always claimed he “changed” after that. And his lying seems like some sort of weird circuit reroute.
You can almost like see it happening and he also would just grab his head sometimes.
He gets help but neurological factors are being dismissed.
Is there any way to help him?
I hope someone can help me or give us some advice how to find out.
It is ruining our lives and our marriage.

Hello, sorry to hear you’re having these difficulties. Someone needs to assess him with neuropsychology in mind. I think it is worthwhile to pursue this with someone who specializes in traumatic brain injury. You may want to Google it. I did find this: Rijndam Rehabilitation Centre and the Erasmus Medical Centre,
Rotterdam, the Netherlands.I’m not sure if that’s near you, but you need to work with specialists who understand brain injury. Others – as you have found – can be less helpful. Good luck to you and your husband. I hope you can find some assistance soon.

Thanks for writing. This whole situation has resolved itself, fortunately. They realized the foolishness of their behavior and have stopped. Also, a lot of the details of the “affairs” were imaginary. The brain playing tricks, and wreaking havoc. Fortunately, it’s behind us now.

After reading your article again, I realized that your friend has PSA, Pseudo-Bulbar Affect. It’s the neurological syndrome that is causing the hysterical laughing and crying episodes. He isn’t happy when he’s laughing or sad when he’s crying. It’s caused by damage to the frontal lobe, and his emotional landscape is a mess.
There is a drug on the market called NUEDEXTA. It was developed to quell PSA. Go to the AVANIR PHARMACEUTICAL website; they offer financial assistance with this drug. Your friend likely has pharmacy insurance but the co-pay can be daunting. AVANIR offers a program to help get NUEDEXTA.
The drug does not address ‘straight up’ TBI without PSA. The AVANIR website doesn’t discuss anything but the clinical trials on patients with PSA. Not all TBI sufferers have PSA; my friend doesn’t. PSA is considered a ‘classical symptom’ of TBI but not all patients in this category have ‘classical symptoms.
My friend has EVERY other symptom of TBI except for PSA….weird. He’s a textbook case in every way except for the absence of PSA. I’ve researched this subject from right to left and back again.
Treatment for TBI is sketchy at best, but NUEDEXTA seems legit for PSA.

On a side note: Seems like I meet many people who would qualify for a TBI diagnosis even though they don’t have TBI. They’re liars, cheats, of a volatile disposition, etc. I think TBI exaggerates what was already underlying in the person’s psyche prior to the brain insult. Just my theory.

Could be. Although they are intensely emotional and really do feel what they’re expressing. It’s more about them not being able to control their emotional lability, and not having the self-awareness (i.e., anosognosia) to see that they’re out of line.

I’ve noticed this with a family member who had a TBI in an auto wreck a little over a decade ago. A person I always knew as sharp and intellegent, they now regularly lie about the most trivial things. Like a newly released movie. She’ll say “yeah I remember this one, only the ending was such and such..” and proceed to make up an alternate ending that the directors had since changed supposedly. Wierd stuff. I can only think thats her only way of maintaining a conversation anymore. Starting to see an inability to manage finances. Wont even keep track of an account balance, just constantly wondering why she’s being overdrafted and blaming the bank. All very scary and I’m terrified for what the future holds.

That is scary. And as a family member who’s aware of what’s happening, you can make a positive contribution by helping them understand something is “up”. It’s hard to strike a balance, but one of the biggest problems folks with TBI face, is not realizing when things are going south… until it’s too late. And sometimes a lot of people notice, but don’t say anything. And then we dig ourselves deeper into the hole.

It could be that this family member actually thinks she’s seen the movies she’s describing. I know I used to fill in blanks all the time for stuff I didn’t realize I didn’t know. Something told me that I did. And not much good came of that.

As for the financial pieces, that is scary. Maybe just talk her through her situation and help her come up with some strategies to “keep ahead of the bank”? I had terrible money problems — lost thousands and thousands of dollars I’d worked hard to earn and save, because I couldn’t keep track of what I was doing with all the money. Just looked around one day and couldn’t understand why my bank account was nearly empty, after all those years of earning and saving.